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Author
Topic: Really upset by the researchers and the docs (Read 20336 times)

Since I know I am infected, I have raise question about putting into culture our own cells (cleaned and multiplied), doing blood transfusion and so.

Everybody told me, including Dr Gallant, that it just doesn't work.The come the stems cells results, the OPAL, the VRX496 etc, showing the opposite.

Even my ID doc think there is an abuse there, and all the poz community just follows.

It's a shame.

My point is:

There are ways, simple, cost effective, without side effects that can extends the life of poz people without the use of toxic substances.

Could be either putting cells in culture and inject them back, blood transfusion (CCR5), etc all these directions must be investigated. It is still not the case 25 years after.

Doctors

For 5 doctors I have meet, only 1 was having an acceptable understanding of how to treat HIV.One told me to take 3 PI, the others told me he always prescribe 1st line drugs no matter the genotype, the other told me a genotype should be made once resistant to drugs, not before, another was looking in his PALM the symptoms of the HIV, etc

Most doctor have no wishes to really extends life. They are not curious about HIV. They go home when it's time, that's it.

The point is that it clearly appears that after billions invested in the research, simple path are not seriously investigated.And that most of the ID docs are incompetent treating HIV.

Tell me why traces of lentiviral vectors are still detectable in the blood 3 years after a single injection, and why those cells reinjected without this lentiviral vector but with CD4 having only CCR5 receptors won't work at least for few months or years ?

Explain me why a blood transfusion should work just few days (Dr Gallant) if it take a year to loose 40-100 CD4 ?

I would like the research to investigate such direction, and all others that my skills make me unable to mention, and I would like the Doc to know more than us about HIV, at least a majority of us.

and there's all sorts of mysteries about why things do and don't work in the body. science is riddled with such unanswered questions. it doesn't point to incompetency or lack of caring on the parts of medical practitioners or researchers.

So to be short: Why it has take 25 years to discover that stems cells might work ?

Who knows? To this day, no one knows precisely how plant photosynthesis works or exactly how it goes down when sperm meets egg. Or how exactly to cure a cold. A lot of life is just a mystery and may never be fully solved. It doesn't point to incompetence.

Explain me why a blood transfusion should work just few days (Dr Gallant) if it take a year to loose 40-100 CD4 ?

I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.

Logged

"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Common thunder34, as someone not on meds, I have read a lot. My doc himself is not on meds.Yet another one who just follow the others.

Note:Ohh, about my gf:I told her already: you are not my doc. We won't talk about HIV. It's not the root of our relationships. Point.But on this very specific subject (we have talk HIV at the very beginning of our relationship), she told me to think that it's like with the tobaccos companies. Initially, smoking was not life threatening, and everybody has follows, until the truth have been published.

I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.

It doesn't explains then the outcome Phase I of the VRX496 trial (lentiviral vector still detectable 3 years after), neither the outcome of the stems cells.

Not cause becoming insane, just to preserve our relationships and cause talking about it would create a patient-doc relationships.I'm also the man I use to be before having the virus, and she can have a normal relationships with me until the D-day.

Who knows? To this day, no one knows precisely how plant photosynthesis works or exactly how it goes down when sperm meets egg. Or how exactly to cure a cold. A lot of life is just a mystery and may never be fully solved. It doesn't point to incompetence.

It is: why the research is not considering the paths mentioned above ?

John, don't be offended by what I'm going to say, but I've seen this pattern over and over in all of my years dealing with HIV.

A small number (or not so small) of newly diagnosed people assert their need to "control" their viral infection (meaning control mentally) by overdosing on scientific information on the internet (which let's face it can be all over the place) and attempting to reformulate 25 years of HIV research techniques. Do you honestly think you know more than the scientific community on how to approach all of this? It's a bit odd, honestly.

Think about it. Maybe some psychological counseling would be helpful? Do you have access to that?

Ohh, and the hazard is also that the people behind studies stems cells / OPAL are resp. a Doc and a university.Not a pharma company.

Donations have been made from all around the world to finance the research.Myself, a newbie in such research, have raise such question few days after knowing my status.Why not Dr/Pr in biology ? But that is not the question.Just upset that such results have take 25 years to start to be published.I do not see also a rush regarding the stems cells. Just few articles, no more.

I'd say its either 1) there is a global conspiracy involving millions of people, 2) there is a global stupidity where no one besides you ever thought of this, or 3) you do not have a comprehensive, lettered understanding of the history of HIV research

You're right, its all so simple. Just a simple CCR5 blood transfusion. Thank you for finding the cure to the global AIDS epidemic, John2038. We can finally end all the work of those silly scientists/conspirators/buffoons.

Who knew - 25 years and billions of dollars later, all we needed to do was ask some random guy on an internet forum for the cure. It's just so simple!

Logged

October 2007 - Chose love/stupidity over protection23 April - Diagnosed30 April - CD4: 364/22.1% VL: 2,19811 July - Started Viramune/Truvada13 August - Undetectable

But 25 years for a Doctor and not a pharma to try to do a blood transfusion with CCR5 receptors only, it's a bit too much.Especially because this approach make sense:If the virus can't bind to such receptors, and if some people in this world only have these one, why not try to do a chemio and then a CCR5 blood transfusion ?

If the main target of the virus are the CD4, why not just invest money finding a way to replicate these CD4s, and get, could it be on a regular basis, a shoot of them ?

This 2 obvious questions are today our most promising ways to treat HIV (but the KP-1461 is promising as well), despite they are not a cure. Instead, we got toxic drugs that keep us drug dependent and infected.And such drugs are much more complex to develop than doing just a blood transfusion.

Then come OPAL. What next ?

Note:I am a stupid guy, I believe that as well. That's why maybe I can't understand what others do understand.Really. So my apologize if it is the case.

Harvesting, growing and transfusing your own CD4 cells would be a) expensive, b) difficult and c) futile, because they don't tend to live very long in the peripheral blood (maybe a day or so). That is probably why there has been a rush to try it.Transfusing someone else's cells is even more difficult and more expensive -- there are a whole host of proteins on these cells that could potentially turn the body against them - thus causing severe reactions. To be clear -- I've worked in blood banks, so I'm not speaking about things that I don't know -- although I've never attempted to harvest and grow lymphocytes.

Taking a study or two that may be looking at something doesn't mean it's a viable solution -- they are LEARNING things that maybe will lead them to others possibilities -- MAYBE. Honestly, do you think the entire scientific community is stupid and that you, alone, hold the key to solving the riddle of HIV?? Do you think that scientific minds haven't considered what you are ranting about here??

As for the billions of dollars that have been spent - do you think it's all been for naught?? Those billions have helped keep people like myself (and many, many others on these boards and elsewhere) alive. If you don't think so, compare the death rates in countries like the USA to others in sub-Saharan Africa and tell me the "toxic" meds don't work. Are they perfect? No. Is big Pharma a model to replicate? No - but I for one am glad that someone came up with these drugs to keep me going.

At the end of the day, it borders on insanity to think there is this giant conspiracy in the scientific community against making progress on HIV. Scientists are inquisitive people -- they want to know things and figure things out -- I'm sure no one would hold back on a breakthrough that would likely lead them to fame and, maybe, a Nobel Prize.Take a breath and stop researching for a little while -- this level of angst is not good for your immune system. Seriously!Mike

1- pharma conspiracy2- no one have think to those paths so what, I am the best ?

But it's none of both.

It is:

1- Why CCR5 blood transfusion have not been much made earlier. So far, this multi-resistant patient with a leukemia who have been treated by this doctor in Germany is now undetectable and out of meds (CROI 08)The question is: no matter if it was just due to luck, why such approach haven't been investigated much earlier ?

2- If you were right about harvesting, growing and transfusing our own CD4, then Virxsys should stop the development of the VRX496. Because this is exactly what they are doing (in more of adding their own vector).

3- Adding peptides (OPAL) sounds quite simple and promising.

Again, it "doesn't matter" if none of the technics above will work or not.The question is why such approach are only investigated now, as they are much more obvious and simple than any others approach followed so far.

Again...who knows? It could be, as stated earlier, that they know more about the big picture than you do. Or... sometimes people do just miss the obvious. It wouldn't be the first time such a thing has ever happened. Sometimes you can't see what's right in front of you until after you've looked at it for awhile or even stepped away from it for some time and come back to it.

I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.

I wanted to say something similar Edfu, but I'm feeling lazy today so I'll just quote you if you don't mind.

I personally have NOTHING to thank to my incompetent ID doctor... who knows?... perhaps later if i ever get to receive health care again.My 5 cents are... yes, many Doctors are completely incompetent, i personally think there is a huge gap in the way information about how to fight the epidemy is spread around the world, plus there are lot of freak info floating around... Many countries does not put enough effort on training doctors about the last info discovered about aids and how to fight it. Same like meds, i don't know how long ago was lauched atripla in the US market... yet none knows about it here, not even doctors. So John2038 you have your point in that.

About the scientific argument, perhaps some of these options were checked in the past but perhaps the technology to go deeper in this was not developed in that moment, perhaps they didn't see it as promisory... i am sure there are million ways to fight aids... but they cannot follow them all... they have to bet... to follow the one that might help. I think for every research lauched with positive results, there are many others who were not published... or were left unfinished because funding constrains or many other things. That is impossible to know clearly.

I understand your anger, i have felt it too... but from our position there is few we can do. I have always though a hiv+ doctor should be the one looking for the cure... he would understand how CRUCIAL it is, or perhaps a positive doctor should handle the INH in my country, so they would understand the need of working 24/7 and do it fast. I have just found we don't have such profiles among us... eventhough with the time our profiles have evolved from knowing nothing about medicine to become highly educated on this topic without being doctors. Still with it... we don't have much scientifics among us... nor people on positions where they can make things happen. Perhaps that will take 25 years more... or a bit longer.

In the mean time, i would suggest to do something constructive with our ideas and motivation, don't discard your doubts, but try to join a network of activists or scientifics or a working group advocating in favor of more researches about new ways to fight aids, i think in those places you will find the info and perhaps de answer you are looking for... such networks offer you something these forum cannot.

Yet, thank you for challenge us to question ourselves about these things.

Some of the most exciting biomedical research of the 21st century isn't getting done. Research on stem cells from human embryos has become so entangled in politics and public misunderstanding that researchers are worried about serious delays in understanding life-threatening diseases.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

May I ask, what are your current absolute CD4s, CD4% and Viral Load? I ask because ... well ... I'm curious. I've just had a brief look through your posting history and you don't seem to mention them anywhere.

You're fairly recently diagnosed and fairly recently infected. That much I do know. Thing is, when I was recently diagnosed, I did the same thing you are doing. (looking at research and drawing wild conclusions, but I didn't post about my "findings" anywhere, I kept them to myself)

I'm lucky enough to have an hiv doctor who is primarily an hiv pharmacologist. He told me to "chill out", in essence. And he was right. Our hiv database and treatments have changed drastically from when I was first diagnosed in 2001. The first line therapy I would have been started on, if I had insisted in 2001, is quite different to what my options are now in 2008.

You've got years ahead of you yet, John. Why the panic? Why do you want to point fingers at researchers and doctors who have been trying to help people like us? Instead of going after easy targets, why not go after politicians who are responsible for the underfunding of this pandemic? Money makes the world go round, whether we like it or not.

You seem to have a lot of energy. Why not put that energy into lobbying politicians instead of denigrating people who do actually want to find answers to the hiv question?

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I believe that sometime, as it is the case with the stress, we don't see ourselves worrying (or stressing).Is it the case now ? I do not feel to be under panic nor under stress, but it might be because such things must be detected by others than ourselves. Who knows ?

Actually, I feel to be thinking as the scientist I am supposed to be, (in a different field). I might be wrong doing so as I am not enough skilled in bio.

My currents CD4, % and VL are in my signature.

Believe me or not, I do not fear at all to die. Not at all. Death is nothing for me. I have the faith.

Regarding my energy, and the possibility to invest it into lobbying politicians, it can happen.I'm made to defend causes generally speaking, but I am not only poz, and a huge part of my energy is going into field related to my work.

Now I have things that I want to realize: in particular a software, pluggable, that would help to make a synthesis of the research. I'm thinking about it since I am poz, and hopes such tool could be useful.I might start something on sourceforge, and if it is the case, I will talk about it probably her, maybe at the end of this year.

Otherwise Ann, as we are talking personal things, and with no reasons now, I just would like to let you know that I appreciate the work you are doing here, as well as your personality. I guess the one I'm feeling through your posts:Calm, and the right words at the right time. Really. So

Otherwise, I will think to your suggestion (investing energy into lobbying as well), but I will need to work on my argumentation and my English. Not that it will change the world, but isn't the sea made of drops of water ?

I believe that sometime, as it is the case with the stress, we don't see ourselves worrying (or stressing).It is the case now: I do not feel to be under panic nor stress but it might be because such things must be detected by others than ourselves. Who knows ?

Sorry to says so, but this is a typical American approach (nothing bad behind this argumentation pls trust me).It doesn't means you are wrong at all, but so far, again, the counter arguments in this thread are not convincing me neither.Now if I have good reasons to think that I am wrong, and if despite that, I continue to argue, then yes, I will see a psy.

So far, many ID-HIV docs are incompetent, and xyahka have find better arguments than me to express this feeling.For the research, in particular the stem cells, I have agree with Ann that she was right.Now I am talking also about more trivial research, still not done after multi billions and 25 years.For eg CCR5/CD4 transfusions or peptides.

But that's fine, I will most probably let this thread where it is now, and if I have still something to say to express my feeling, I will probably find better arguments (more scientific) and an other channel.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I was ready to give up this thread, but I am a scientist too, so.Again, the mosts promising treatments are the most obvious. No answers so far, just vague arguments. Ohh, but maybe I am hit by the dementia ?Will have it be the same if I was arguing that smoking kills 20 years ago ?